Support for Caregivers of Mesothelioma Patients

The role of a caregiver in a mesothelioma patient’s life carries a lot of importance. And while caring for a patient’s needs will be at the top of your list, it’s important to care for yourself in this difficult process as well. Being a caregiver can be tiring physically and emotionally. Although it’s impossible to make it easy, there are ways to make it less difficult for you.

Mesothelioma Caregiver Duties

If you’ve become a caregiver for a loved one with mesothelioma, it’s important to familiarize yourself with what to expect in this role. As a caregiver, your duties will vary depending on the patient you’re caring for.

However, there are duties that many caregivers have in common, including:

  • Managing Medications and Checking Health: Caregivers can keep an eye on their loved ones’ health and provide first-hand feedback on the effectiveness and side effects of various treatments. Caregivers may also want to monitor for changes in the patient’s health and accompany them to doctor appointments and rounds of treatment.
  • Offering Emotional Support: Caregivers can have a positive impact on a patient’s state of mind. In addition to providing motivation and encouragement, you can be of immense help by simply listening to the concerns and thoughts of your loved one. Communication is important for their well-being, so having you there to let them vent their frustration or simply muse can be very valuable. Although mesothelioma is at the forefront of your minds, it’s also nice to sometimes be there to take the patient’s mind off the stresses of the disease. Talk about your favorite topics and hobbies and foster a comfortable, familiar atmosphere—mesothelioma doesn’t always need to be front and center.

We know that offering positivity and encouragement can be hard when you feel hopeless as well. Try to stay in tune with what your loved one needs while making sure to attend to your own emotional needs in your own time. You may need someone to talk to as well, and we can help you find that support.

  • Managing Daily Tasks: Daily life is going to be a lot harder to handle when a patient is going through treatment and focusing their life on their health. Tasks and errands that were once simple may now be stressful burdens for a patient. If the patient is recovering from surgery or undergoing chemotherapy, fatigue could prevent them from daily upkeep. To keep things running smoothly, you might need to step in and help out with tasks such as:
    • Cleaning and home maintenance
    • Driving or arranging transportation
    • Assisting with dependents (children, etc.)
    • Scheduling appointments
    • Planning finances
    • Feeding and planning meals
    • Dressing and bathing
  • Making Decisions: It may fall to the caretaker to make important decisions in their loved one’s best interest. These include critical calls pertaining to their treatment, end-of-life-care and legal or financial wishes.

Finding Time for Providing Care

Caregivers are busy individuals with their lives, jobs and additional relationships. While taking care of your loved one with mesothelioma takes priority, these other obligations don’t just disappear.

You may need to take time off work. If you’re concerned about your employment, you can refer to the Family and Medical Leave Act of 1993, which allows select caregivers up to 3 months of unpaid time off with job protection. Your group health benefits are also maintained during this time. The FMLA is applicable to all employees of public and private schools, public agencies and corporations with at least 50 employees.

You may also need to arrange childcare if you have kids or re-adjust your finances to account for unpaid time off. Luckily, there are many resources to help you find the time and ability to care for your loved one.

Resources for Caregivers to Consider

Planning ahead will only make your time as a caregiver less stressful. It will also allow you to focus your efforts on the comfort and wellbeing of the patient.

Here are some items to consider in your mesothelioma caregiver planning:

  • Transport: You may not always be able to take your friend or family member to the hospital or clinic. Transport for cancer patients is often offered by local services and is also offered by the American Cancer Society through their Road to Recovery Program.
  • Accommodation: If your loved one is receiving care out of town, you can take advantage of housing discounts near the hospital. Many hospitals either have their own accommodation for long-term care patients or have partnerships with residences in town that offer discounted rates for patients. If this isn’t the case, you may be able to secure a more affordable rate by contacting hotels and informing them of your reason for needing accommodation. Other options include checking to find lodging for cancer patients in locations around the country. Or look into the American Cancer Society’s Hope Lodges.
  • Financial and Legal Planning: You may want to consider meeting with a financial planner to discuss how you plan to finance treatment and other forms of care. Depending on the patient, you may also wish to speak with a mesothelioma lawyer to discuss compensation and anything else your loved one may be entitled to.
  • Health Insurance Planning: Work with your insurance agent to ensure you fully understand the details of your coverage so you can responsibly plan how you will cover primary and secondary medical costs.
  • Long-Term Care Planning: Certain mesothelioma patients may end up needing to stay in a long-term care facility. You’ll want to find a reputable and comfortable facility that meets your loved one’s needs. You can ask your doctor for any recommendations or do your own research into facilities that may include a dedicated in-house care team.

Education for Caregivers

You can best care for your loved one with mesothelioma if you are well familiarized with the disease and its treatments.

There are many online resources, including the website of the American Cancer Society.

Our website provides clear and comprehensive information and resources for mesothelioma patients and caregivers.

Please feel free to use any and all of our educational resources to help you become a better caregiver. You can also contact us with any questions about the information you find on the site.

Lastly, if you accompany your loved one to their medical appointments, you can ask the oncologist to clear up any inquiries you might have. This is a huge help to your loved one, who may feel overwhelmed by the volume of information they’re receiving about the disease.

Self-Care and Self-Support for Caregivers

In a time when you’re thinking and worrying about your loved one with mesothelioma, it’s easy to forget to care for your own needs. Although you’re going through an emotional time, you may feel the need to put your own feelings aside to focus on caring for your friend or family member.

It may help to remember that caring for yourself will only help you to be a better caregiver.

To cope with your emotions, you can opt to see a counselor—either on your own or with your loved one. You can also call the Cancer Hope Network to speak with a Support Volunteer. If you feel that you may be experiencing depression or you are so overwhelmed that it interferes with your daily tasks, it might be best to see a clinical psychiatrist. All these resources are meant to help you—not limit or patronize you. Many people dealing with a loved one’s cancer have found hope and motivation through these channels.

You can also take your self-care into your own hands. Try a few of these ideas to see if they help you be more productive, energized, and optimistic:

  • Get enough rest—don’t overextend yourself
  • Stay organized to help keep you on track and prevent you from getting overwhelmed
  • Communicate with professionals as well as friends and family if you need to
  • Get outdoors and stay active
  • Eat a healthy diet
  • Make time for activities you enjoy with people you like being around
  • Don’t feel guilty about pampering yourself once in a while
  • Consider joining an in-person or online caregiver support group
  • Learn about mesothelioma—nderstanding the disease can help you be a better caregiver and help you cope
  • Ask for help if you need it and don’t feel that you need to take on everything yourself

If you need help finding support resources or you have any questions about caring for someone with mesothelioma, don’t hesitate to reach out. Call our Caregiver and Patient Advocates todat at (866) 608-8933.

Mesothelioma Support Team

Mesothelioma Hope was founded by a team of advocates to educate people about this aggressive form of cancer. Mesothelioma affects thousands of people each year. We help give hope to those impacted by mesothelioma.

View 3 References
  1. “What Is Respite Care?” Publication: Retrieved from: Accessed on: January 17th, 2019
  2. “What Is Respite Care?” Publication: Retrieved from: Accessed on: January 17th, 2019
  3. “Respite Care for the Elderly” Publication: Retrieved from: Accessed on: January 17th, 2019

Call 866-608-8933

Give us a call now to get more information and discuss your options with our team of medical and legal professionals.

Call now to discuss your medical and legal options with a patient advocate.